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hi just joined this forum wondering if anyone has experienced similar experience to me or has tips till i get confirmed diagnosis

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sasha123

New Member
Relationship to Diabetes
Type 1
i was on a medication which gave me terrible side effects, i got off it and since then ive been struggling with a few issues that have not resolved inc really high blood sugar levels, my dr has called it medication induced diabetes and is unsure if its type 1 or type 2... im awaiting results from a test which should give clearer details whats going on but theyre not expected back for another 2 weeks and in the meantime my blood sugar levels are anywhere between 12mmol-30mmol. im on a small dose of insulin twice a day but as soon as i eat anything my levels go crazy even if its no sugar no carb. ive been struggling to eat bc i cant take seeing the glucose levels go so high and anything seems to send it up. today ive not eaten and my levels are the lowest theyve been in over a week between 11.7-12.9mmol which i know is still high........
i guess im just really confused with all this and feeling awful with such high levels for so long but im being told i need to wait for the resukts of that blood test to know which type and then where we go from here.

anyone experienced anything similar or any tips to get through these difficult days?

i should also mention i struggle with a couple other chronic illnesses,n have had no prediabetes levels.. i am a bit of a complex case :(
 
Thanks im aware abt steroids. It is listed as one of the rare side effects of what I was taking but non of my Drs have come across it like this
 
Hi Sasha and welcome.

Sorry to hear your BG levels are so high. That must be making you feel pretty rough.
The first thing to do is to drink plenty of water to help flush some of the glucose out through your kidneys.

You need to speak to the doctor or nurse who is overseeing your treatment to discuss an increase in insulin to bring those levels down.
In the meantime, for food, eggs should not affect your levels, so a boiled egg salad with plenty of lettuce and cucumber and mayonnaise or coleslaw, but go steady on the tomato... just one or two small ones. Omelettes are a really good nutritious quick and easy low carb meal and you can vary the filling including mushrooms, ham, cheese, onion, courgettes, aubergine, peppers etc. I often have them with a salad and cheese coleslaw as part of my low carb diet.
I had a nice meal the other day of grilled bacon and steamed cabbage, cooked in a little butter. It was really tasty and low carb. Just a few suggestion, but do your best to avoid foods like bread, pasta, rice, potatoes, pastry, breakfast cereals etc , even fruit, which is high in natural sugars, as well as the obvious sugar itself, sweets cakes and biscuits, at least until your levels are lower and more stable.

Have they given you any ,means of testing for ketones.... strips to dip in your urine perhaps? Usually under the name Ketostix. If not ask for some or buy some yourself from a pharmacy (about £5) because with levels regularly mid teens and above you should be testing for ketones. If you get ketones indicated on the strips when your BG levels are high then you need to seek urgent treatment either by calling 111 or getting yourself to A&E as you could be at risk of Diabetic KetoAcidosis (DKA) which is very serious. Likewise if you start to get stomach pain or difficulty breathing or your breath starts to smell funny (like pear drops) then it is time for hospital. BG levels of 30 are very serious, even if you feel OK, those levels are dangerous, so do your best to bring them down. That means getting better treatment with the help of your health care professionals... either doctor or trained nurse
 
rebrascora said:
Hi Sasha and welcome.

Sorry to hear your BG levels are so high. That must be making you feel pretty rough.
The first thing to do is to drink plenty of water to help flush some of the glucose out through your kidneys.

You need to speak to the doctor or nurse who is overseeing your treatment to discuss an increase in insulin to bring those levels down.
In the meantime, for food, eggs should not affect your levels, so a boiled egg salad with plenty of lettuce and cucumber and mayonnaise or coleslaw, but go steady on the tomato... just one or two small ones. Omelettes are a really good nutritious quick and easy low carb meal and you can vary the filling including mushrooms, ham, cheese, onion, courgettes, aubergine, peppers etc. I often have them with a salad and cheese coleslaw as part of my low carb diet.
I had a nice meal the other day of grilled bacon and steamed cabbage, cooked in a little butter. It was really tasty and low carb. Just a few suggestion, but do your best to avoid foods like bread, pasta, rice, potatoes, pastry, breakfast cereals etc , even fruit, which is high in natural sugars, as well as the obvious sugar itself, sweets cakes and biscuits, at least until your levels are lower and more stable.

Have they given you any ,means of testing for ketones.... strips to dip in your urine perhaps? Usually under the name Ketostix. If not ask for some or buy some yourself from a pharmacy (about £5) because with levels regularly mid teens and above you should be testing for ketones. If you get ketones indicated on the strips when your BG levels are high then you need to seek urgent treatment either by calling 111 or getting yourself to A&E as you could be at risk of Diabetic KetoAcidosis (DKA) which is very serious. Likewise if you start to get stomach pain or difficulty breathing or your breath starts to smell funny (like pear drops) then it is time for hospital. BG levels of 30 are very serious, even if you feel OK, those levels are dangerous, so do your best to bring them down. That means getting better treatment with the help of your health care professionals... either doctor or trained nurse
Click to expand...
hi thank you for taking the time to respond,

im definitely going to speak to my nurse tomorrow. i am drinking loads and loads but honestly theres a limit to what more i can do....

you have given some great suggestions of food ideas, now i need the appetite to eat with how awful this is making me feel!

i am testing my ketones with blood ketone strips, very interesting but when my BG is between 12-18 my ketones have been between 1.5-2.2, ive usually managed to bring the ketones down by drinking loads within a couple hours but BG would be raised alot higher in the high 20s by then and all ive done is drdink water . does that make any sense to you?
 
Great that you have Blood ketone strips. At least your health care professionals were on the ball with that. With ketones at 1.5-2.2 and mid teens BG readings you should have been seeking medical advice via 111 or A&E. I am not sure that water can take ketones down so it may be something else. The water is to flush the glucose out of your system but I appreciate there is and should be a limit to the amount you drink because too much water can cause problems too.
Which insulin have they given you and how much are you using and how long have you been on it?.
 
rebrascora said:
Great that you have Blood ketone strips. At least your health care professionals were on the ball with that. With ketones at 1.5-2.2 and mid teens BG readings you should have been seeking medical advice via 111 or A&E. I am not sure that water can take ketones down so it may be something else. The water is to flush the glucose out of your system but I appreciate there is and should be a limit to the amount you drink because too much water can cause problems too.
Which insulin have they given you and how much are you using and how long have you been on it?.
Click to expand...
I'm very confused, I think I should probably be in hospital but they're trying to keep me at home, I spoke to specialist nurse when levels were that high and followed her advice.....
In her defense bc there is other things going on it's complicated to no what to tell me.... my thyroid function is totally out of control which could very much be contributing so trying to break the cycle somewhere.
Im on levemir twice a day, started a week ago on 10 units morning and 10 at night and now on 16 in the morning and 12 in the evening and it's being reassessed on Friday
 
Can I ask what your body weight is?
That is not a particularly small dose of Levemir to be started off on for a Type 1 unless you are overweight and suffering insulin resistance.... in which case Type 2 diabetes is probably more likely and for a Type 2 that is probably quite a small dose, but then from your readings it looks like you need quite a bit more.
For comparison, I am currently taking 15 units of Levemir a day but I get quite a lot of exercise so that reduces the amount I need and I also take a few units of Quick Acting (bolus) insulin to cover any carbs I eat, but I try to keep as low carb as possible to keep it to a minimum. That said, we are all different and you can certainly not diagnose type of diabetes from insulin needs alone.
I hope you get some further help tomorrow to get those levels down more and an outcome of further tests so that you know what you are dealing with, have a proper diagnosis and appropriate treatment plan.
Please let us know how you get on.
 
Barbara - I was on 18-20u Levemir daily, plus my Novorapid - and I'm max 9 and a half stone, so I'd say it's nowhere near enough for most Type 1s, who are usually taller than 5ft 2 with bigger everything to match! Not at all unusual to find a T2 needing over 100u a day. We each need what we need and that's the truth. Clearly 20u isn't enough for sasha on it's own however big or small she is anyway, but until they also get her thyroid situation properly sorted as well, they'll never get her insulin doses titrated properly.

Hence she needs to ring the docs tomorrow and tell them it needs increasing again before Friday! The ketone levels should ring alarm bells anyway as you've said. @sasha123 - if you can't get any sense out of your GP surgery in the morning please please ring 111 instead.
 
Hi @sasha123 Whatever Type you are, it sounds like you need more insulin and some medical input. Those are high levels. You may well need an additional insulin that you can take before meals so that you can eat properly.

Please do speak to someone today ASAP.
 
Good morning @sasha123
Sorry to hear that you are having so many problems with your levels at present.

I hope that today you get some medical input as it is clear that the amount of insulin you are using is not currently dealing with you glucose levels whether that is due to T1 or T2. You mention that they are wanting to keep you at home if possible, which means they need to support you inmanaging your levels including those high ketone levels.

Let us know how you get on.
 
Welcome to the forum @sasha123

How have things been going over the weekend?

Hope you have managed to get an emergency appointment of some sort. If nothing else perhaps call NHS111 to see if they also recommend A&E.

Elevated BG and ketones 1.6-2.9 do put you at increased risk of DKA and you should be seeking medical attention as soon as possible.

www.nhs.uk

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.
www.nhs.uk www.nhs.uk

Hope you get some effective support very soon
 
Hi all ive been through alot till now with trying to get things under control, I've just come back to update and seen the rest of your responses, thank you all for being so kind caring and concerned it's been quite a ride! To clarify I am overweight, I do have multiple other medical conditions and autoimmune diseases ive been battling for about 10 years now. I finally got complete tests done and results back showing to quote "my pancreas is as good as dead" meaning im type 1 diabetic! Having this confirmed properly is definitely a relief to now know for certain. Ive been on levemir for a few weeks which has helped a little but ive barely been eating bc every time I did I spiked terribly. the last 2 days i started on novorapid when eating and finally have started to see my numbers not spiking so high when eating which is a big relief.
 
So pleased that you have had the appropriate tests and you now have basal and bolus insulin to manage things. I hope you start to feel better soon.
 
Oooh, thank heaven for a proper diagnosis and appropriate treatment! Couldn't happen soon enough. Now you at last have the opportunity to get on top of it properly. Absolutely ANY thing you need to know - ask, ask, ASK!!! There are no stupid questions, ever !!!
 
trophywench said:
Oooh, thank heaven for a proper diagnosis and appropriate treatment! Couldn't happen soon enough. Now you at last have the opportunity to get on top of it properly. Absolutely ANY thing you need to know - ask, ask, ASK!!! There are no stupid questions, eve
rebrascora said:
So pleased that you have had the appropriate tests and you now have basal and bolus insulin to manage things. I hope you start to feel better soon.
Click to expand...
Thank you so much. Just trying to wrap my head around things at the moment.
Click to expand...
Don't know if anyone hear would have anything to say that could help but I've also been struggling with a restrictive eating disorder which im trying to access help for but carb counting and all this is kinda the worst thing for me now!
My diabetes team are aware of all this and have been amazing in the aspect that they took note of everything I am managing to eat and they' calculated it for me for the moment and are checking in constantly to see how things are going and guiding me instead of throwing it all into me! I have no idea the calculations as of now.... I'd just b obsessing :(
but if anyone here has been through this and recovered and is now able to be in control of it all themselves without relapsing I could really use some motivation, inspiration or any words of hope that it's possible.
Having this new type 1 diagnosis also makes my access to eating disorder treatment much more complicated

Also could I ask if you respond you press reply to me so i get an email notification as otherwise I may miss it. Thank you so much
 
sasha123 said:
Don't know if anyone hear would have anything to say that could help but I've also been struggling with a restrictive eating disorder which im trying to access help for but carb counting and all this is kinda the worst thing for me now!
My diabetes team are aware of all this and have been amazing in the aspect that they took note of everything I am managing to eat and they' calculated it for me for the moment and are checking in constantly to see how things are going and guiding me instead of throwing it all into me! I have no idea the calculations as of now.... I'd just b obsessing :(
but if anyone here has been through this and recovered and is now able to be in control of it all themselves without relapsing I could really use some motivation, inspiration or any words of hope that it's possible.
Having this new type 1 diagnosis also makes my access to eating disorder treatment much more complicated

Also could I ask if you respond you press reply to me so i get an email notification as otherwise I may miss it. Thank you so much
Click to expand...
Sorry to hear this, we have a member who is taking a break from the forum at the moment, who following diagnosis developed a fear of eating carbs not long after. There is a specific eating disorder known as Diabulimia that occurs in some there is a charity for it but I can't remember the name of it maybe @everydayupsanddowns does.
 
Sorry to hear that you are living with disordered eating @sasha123 - and you are right that T1 makes dealing with an eating disorder additionally complex. In fact, I have heard some campaigners suggest that a diagnosis with T1 is almost a prescription for disordered eating, because of the way it changes your relationship to food.

But there is hope! Many T1s affected by disordered eating are seeking and finding specialist support, both from specialist clinicians and also from the charity sector.

It is difficult, but this is something that you can tackle.

The charity @grovesy was thinking of is DWED I think?

dwed.org.uk

DWED: Diabetics with Eating Disorders

dwed.org.uk dwed.org.uk

Good luck, and let us know how things go 🙂
 
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